DESPERATE: Does anyone have any experience of UV Light Therapy or Azathioprine to treat Eczema?? Have to make a decision before we go back to Alder Hey in 3 weeks and I cant!!

[Nixz]

DD has severe eczema and our recent visit to Alder Hey made me take me head out of the sand and realise the impact its having on her life.

Consultant gave me 3 weeks to decide on Light Therapy or Azathioprine.

With the light therapy, there would be less side effects but I would have to take her to Alder Hey 4 times a week.
I would have to find a way of working part time (i dont know how i would manage financially) and DD would miss a lot of school as it is quite far away. It would change our lives.
Im not sure how long each session lasts... i dont know anything about it.

Same with Azathioprine (this is the drug that transplant patients take to shut off bodies immune system), it has some pretty horrible side effects, treatment is anything from 4 months to 12 months and then hopefully some 'excema free' months and then the treatment starts again. we would have to go to Alder hey every 2 wks for blood tests.

Im in shock about this... didnt expect it.
Please help me make a decision and share any knowledge or experiences you have

Anyone?

I'm sorry I have no idea what you should chose but your post reminded me of this which was a story on our local news on Friday. I don't know if is of any interest or whether you even live in a hard water area.

I hope you don't mind the link, it just that I have little experinece of eczema and I thought of the little boy in the story when you posted.

Thankyou, I have emailed the university of nottingham for more info.

My daughter has tried every other treatment available.

I hope you get something to help soon - it looks like a horrendous thing to have when it is bad. I wouldn't wish it on anybody, let alone a child.

Small bump for to see if there is anybody who actually has something useful to say.

I have had uv therapy for psoriasis. When I was a young child I was in an inpatient for 5 weeks. Schooling wise I don't think it had a huge impact.

How would you travel? If on the train and its a reasonable distance then you could do school work on the journey.

I can honestly say I'd rather choose the uv therapy than Azathioprine for a young child. Not only because of the side effects but also because you'd have to probably worry about chickenpox and other bugs.

Not at all easy for you. Its not until I had my dd that I realised how hard it must have been for my Mum.

have you investigated food triggers?

Thanks for you responses.
The consultant has said that my dd's exzema is far too severe to worry about food triggers and allergies. Whilst they may help a little, she needs some drastic treatment, even if it is only to free her from eczema for a few months. He said most people/children have some relief from treatments, even if its for a short time but because dd has never had this, she really needs it now as the psychological/sleep deprivation etc will be too much for her body to handle and she needs some respite.

I have no idea whats involved in the light therapy, how long do sessions last? Is it like a huge sunbed? I really have no idea!

my friends son is having this treatment at alderhey...he has had a couple of sessions iirc...If you want to email me I could pass your email onto her if you want. Her son is 12 and his exzema is terrible...head to toe in bandages most days

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The light therapy I know about is a bit like walking into a lit up closet. Sessions start off at a few seconds and build up to maybe a few minutes. They are incredibly short nowadays. (I'm sure when I was a kid it was a lot longer) Protective googles have to be worn to protect the eyes. I remember when I was little it was daunting but the warmth was quite nice compared to the coldness of the room.

my dd is on azathioprine for crohns/ulcerative colitis .This medication took over from the high dose steroids she had been on when she relapsed.
It takes 2 or 3 months to be fully effective and she has been on it for 6 months now.
It has worked very well and she has not had side effects[unlike the steroids].I have to be careful about taking her to dr early,in the case of a fever or infectious disease,as it suppresses the immune system.Howevr,as i was quite scared and worried about it initially,in fact it's been fine.
They had to do her chicken pox immunity status to check she was immune,becos the disease would be more severe.She has blood tests ,at first i think weekly for 4 weeks,then less often,to check bone marrow activity and liver activity.
So for us its been an effective treatment that was scary to start with becos of poss side effects but in fact has been problem free so far.
I also had to ask for advice when measles was in the school etc.

we have most bloods done at gps then sent to hospital for consultant to see.

sorry,how old is she?

Thanks for the reply, she is 8 in 2 weeks.
I never thought about the possibilities of measles etc... to be honest, the consultant didnt give me much information at all.
I suppose that will come on our next visit.

Has she experienced any side effects?

Had uv light therapy aged 9, twice a week for 6 months. Only took 10 minutes at the longest session. The worst thing was being naked in front of the doc, I was very shy.

It wasn't eczema but another skin condition. Next flare up I wasn't allowed more uv treatment and took a different drug with a similar effect to the one described here. I got bug after bug and did half days at school because it was exhausting. Not sure it was worth it for me. Was 20 years ago though so might be better now.

I grew out of the skin condition slowly but still have eczema. The only cream that ever worked was discontinued.

Could she have uv therapy more locally?

no,she has not had SEs from the azath[she did with the steroids].
When she was on both steroids and aza,she lost some hair but this was either due to how ill she had been or the combo of meds.
We have to report any unusual bruising or bleeding,and the initial weekly bld tests are to monitor bone marrow function~i don't think problems occur often,but its important to catch it if it does,hence the blood tests.
Also just have to check with doctors if she has a fever or in touch with infectious disease,as i said.
In her case,it has been a straightforward ,well tolerated medicine with no side effects,but you have to follow the doctors guidelines.
The worst of the blood tests are in the first month or so,if you feel she could tolerate those[they have special technique for young ones],it may well be a very good treatment for her to settle her eczema down[as guided by your DR obviously]

Nim - The treatment is not available anywhere else, she hates hospitals and being naked in front of a doctor would be horrendous for her
Im also worried about her having a lot of treatment, the consultant said 10 weeks initially but im wondering what will happen after that.

Morningsun - The bloodtests we have already had at the hospital were awful. They took it from dds hand and she was hysterical. If she knows she has to have another one, I dont think we would get her in the room!
I know children dont like hospitals and they are scary but my dd is REALLY scared of them, the whole thing is going to be so traumatic for her that the stress is going to make her skin a lot worse.

I just dont know what to do.... im thinking that I should just say no to it all!

It sounds very hard for you both. My Mum always took me out for a treat afterwards and made a big fuss. Our local hospital offered uv therapy though so no travelling thankfully.

The only thing that helped with the nudity was to keep my eyes shut and pretend I was elsewhere.

Nixz ~ were the blood tests done on the paediatric ward with a little anaesthetic cream and "butterfly" needle?[the drs on the ward have lots of practice]
If the blood test problem was sorted out,it is then an easy treatment cos my dd simply takes 2 v small tabs each am[ithink your ddwould only prob take 1 as she is much younger]
and her bld tests are3 monthly or so.
I really feel for you trying to decide what is best ,esp as your dd is so young.
I think,be led by your consultants advice.
Good luckxx

Hi... no my dd cant have the cream because of her eczema.
It was taken from her hand and 2 syringes... awful

To be honest, ive decided not to have the treament, I just feel its too risky at her age.

We are going to see a Homeopathic therapist and also are going to try EFT treatment. Ive never been that interested in natural methods but feel its worth a go.

i suppose the difficulties of the treatments would have to be worse than the difficulties her eczema brings to choose to not treat it.

Only because I really feel strongly that one of the main culprits of dds eczema is her state of mind. She can go to bed with moderate and wake up with explosion!

Also, I feel that there MUST be other things to try before we just jump in for the harsh medical route just because a consultant says so.

A consultant prescribed a cream for her 4 years ago that has now had a black box warning against it as there are now links beiween it and skin and lymphatic cancer. Nice!

It may not work but I will feel better at trying first, its not an option for some but I feel that it is for us.

maybe discuss again with consultant the pros and cons,if you decide not to take his advice this time,leave it open and set time limit,and if it not improved by then,think again.
I mean a consultant from alder hey is an expert and is giving you the benefit of his expertise,he is not gaining anything for himself by what you choose. Conversely,homeopathy etc is not regulated and much more of an unknown.

Nixz, glad U are thinking non-invasive.
Do not ignore diet, even tho your dr is. Wheat is strongly linked to state of mind too U know and homeopath might also suggest diet changes.
Clearly her body reacts to something and the something is what happens on the inside - and what happens on the inside comes from what she eats. By using light or azath.. U will be trying to do away with symptoms, not cause. U need to find the cause.
Bad reaction means bad build-up of immune reaction - which could be either gluten or dairy or both as these are most common.